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Spreading Awareness of CRPS Through CRPS Awareness Month

head shot of Lauren wearing an orange blazer, smiling and facing the camera color photo

Lauren Appelbaum

Los Angeles, Nov. 24 – In March 2018 I was diagnosed with Reflex Sympathetic Dystrophy (RSD), now classified as Complex Regional Pain Syndrome (CRPS), which is a form of chronic pain that usually affects an arm or a leg. With just 200,000 people in the U.S. diagnosed with CRPS in the U.S., most people have not heard of CRPS, which is classified as a “rare disease” with no cure. Therefore, the month of November is CRPS Awareness month.

Since acquiring this disability, I have had the privilege of creating pipeline programming for nearly 100 other disabled individuals. During the 2021 RespectAbility Entertainment Lab for Disabled Entertainment Professionals, we were pleased to have award-winning independent film director and editor Jennifer Valdes as one of 30 Lab Fellows. Like me, Valdes is living with CRPS.

“I used to feel that living life with complex regional pain syndrome wasn’t a life worth living,” she said. “I devalued myself as a human. I felt ashamed of my disability. Disclosing it felt like I was revealing a big secret. I felt isolated and alone. Living with a disability is not the life I planned for, but It’s the only one that I have.”

Jennifer Valdes headshot

Jennifer Valdes

“Learning acceptance has given me strength and pride in my identity,” Valdes continued. “I’m walking out of the fire – stronger, more resilient and wearing a suit of armor. I am staring down the gates to tomorrow. I am standing in the sun with a smile on my face.  Flooding bright light into a dark empty room. Seeing myself – new and improved. I’m wonderful, I’m capable and I’m going to be alright.”

In an online RSDSA/Johns Hopkins School of Medicine poll, individuals with CRPS reported that the syndrome frequently interfered with holding a job (62%, disability rate), sleep (96%), mobility (86%), and self-care (57%).

Earlier this month, Valdes was hired as a part-time Origination Technician at AMC Networks in their technology and broadcasting department. She will be monitoring broadcasts and working with live sportscasts via satellite. “I wouldn’t have been able to do this without RespectAbility,” Valdes said. “You have given me the confidence in myself to succeed! Thank you for all your support!”

Most recently, Valdes directed, produced and edited a blood donation awareness short horror film, in 2019, called The Blood is the Life. The film was nominated as a semi-finalist for the prestigious 2019 Etheria women in film festival, winner of the Best Editing Award at the New Jersey Horror Con, Film Festival Spring 2019 and Best Horror film at Comicpalooza Film Festival 2019 and a semi-finalist of the Women in Horror Film Festival 2020.

To learn more about CRPS, please visit the Reflex Sympathetic Dystrophy Syndrome Association at https://rsds.org.

Meet the Author

Lauren Appelbaum

Lauren Appelbaum is the Vice President, Communications, of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for and with people with disabilities, and managing editor of The RespectAbility Report, a publication at the intersection of disability and politics. Previously she was a digital researcher with the NBC News political unit. As an individual with an acquired invisible disability - Reflex Sympathetic Dystrophy - she writes about the intersection of disability, employment, Hollywood and politics. From entertainment professionals to presidential campaigns, journalists to philanthropists, she conducts trainings on the why and how to be more inclusive and accessible. Behind the scenes in the entertainment industry, Appelbaum engages decision makers and creatives to improve the quality and number of authentic, diverse and inclusive presentations of people with disabilities on TV and film so audiences can see people with disabilities as vital contributors in America and around the world. She and her team have consulted on projects with Amazon, Disney/ABC Television, NBCUniversal, Netflix, and The Walt Disney Studios, among others. Appelbaum also enriches the pool of disabled talent in Hollywood by nurturing and connecting them to those who can assist with their careers, both on the creative and business sides of the industry. She is the author of The Hollywood Disability Inclusion Toolkit, which was created to help entertainment professionals to be as inclusive of people with disabilities as possible, and the creator of an innovative Lab Program for entertainment professionals with disabilities working behind the camera. To reach her, email LaurenA@RespectAbility.org.

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